Let’s say you wake up tomorrow with a terrible stomach ache. I’m sure it’s happened before. But this one is a little different. While the pain started in the middle of your stomach, right around the belly-button, it has since moved down to the lower right-hand side. Not only has the pain moved, but it is getting worse, especially when you move suddenly, walk, or cough. You feel like you have a slight fever and your back is starting to hurt.
What do you do? Well, you probably take the day off work for one thing. If the pain persists, you will also likely consult someone with your symptoms. Who that ‘someone’ is depends largely on your age and where you live. If you are my age – that is, in your 20’s or 30’s – and live in urban America, then your first ‘medical consultant’ probably goes by the name Google. A quick search for my symptoms yields some important and alarming information. One of the first search returns is from an online health encyclopedia run by CareFirst, the parent company of BlueCross and BlueShield. I read about the various conditions which can cause stomach pain: ulcers, irritable bowel syndrome, gallbladder disease, diverticulitis, and appendicitis. Most stomach pain, I learn, can be treated by simply resting at home. Acetaminophen can help relieve pain, but it is important to avoid aspirin, ibuprofen, alcohol, and caffeine. Unfortunately for me, my symptoms match those listed under appendicitis.
So, I do what any self-respecting globalist hipster would do: I look up appendicitis on Wikipedia. Here is the third sentence!!:
Untreated, mortality is high, mainly due to peritonitis and shock.
And then there is this, a picture of an acutely inflamed and enlarged appendix. Nasty. I will never eat sausage again.
I learn the causes of appendicitis, how it is diagnosed by doctors, how it is treated, and how most patients recover. Plus, I am pointed to lots of academic papers which got into more detail about all of the above.
The importance of access to health information is obvious: in the above scenario, it just saved my life.
As it so happens, I’m not the only self-respecting globalist hipster here at Rockefeller’s Making the eHealth Connection conference. Yesterday one of the participants of the Access to Health Information and Knowledge Sharing meeting shared two anecdotes as a way of emphasizing the variety of ways that patients come into contact with information regarding their health. While living in Mexico City her mother was diagnosed with diabetes and the first place she went for more information was Wikipedia. It turns out there are three main forms of diabetes, each with different causes, but that all three are ultimately due to the “beta cells” of the pancreas being unable to produce sufficient insulin to prevent abnormally high levels of blood sugar. What this young woman surely wanted to find out is how diabetes will affect her mother’s health, and what can be done to minimize it. Furthermore, because Type 1 diabetes risk is known to depend upon a genetic predisposition, it is important for her to read about prevention studies. Wikipedia was the first place she thought to look.
The second anecdote was also based in Latin America, this time in the Amazon Rainforest. She was in a rural village, hours if not days from the nearest hospital, when she was overcome by a terrible stomach pain. There was no Wikipedia, but there was a local health practitioner, an elder woman who rubbed a locally made salve on her stomach and told her to rest lying down. Within 24 hours the intense pain had completely subsided.
It is the latter of the two anecdotes which represents how the majority of the world’s population still finds information about their health symptoms. Let’s say, for example, that you are one of the nearly one million residents of Lilongwe, Malawi and your language is Chichewa. You aren’t going to find any information about health among the 46 articles on the Chichewa version of Wikipedia. (If you are a Chichewa speaker, like my friend Victor, you can be the first person to author the Wikipedia page on HIV.)
In fact, if you are a Chichewa speaker in Lilongwe and you encounter information about health in your native language, it’s likely that you heard it on a radio soap opera produced by the Population Media Center that was loosely based around HIV prevention. But if you have stomach pain that started around your belly button and then moved down to the lower right-hand side of your stomach, you have little guidance as to whether you should take some acetaminophen and wait out the pain or stand in line at your local hospital.
Deaths caused by appendicitis also have a significant impact on local economies as most victims are in their early 30’s, which is when they contribute the most to the workforce economy.
There is little doubt that the internet is changing the face of healthcare, but this change has occurred overwhelmingly in the developed world. What about developing countries? How can they take advantage of online tools to provide better access to quality health information for their citizens? Can they learn from the mistakes made by developed countries in the 90’s to ‘leapfrog‘ to the best practices of today?
In a study commissioned by Rockefeller for this conference, Naina Pandita and Sukhdev Singh from India’s Ministry of Communications & IT identify nine barriers to “Equitable Access to Quality Health Information with Emphasis On Developing Countries.” The document is a starting point for this week’s conversations around access to health information in the developing world. By the end of the week participants will further refine and analyze these barriers and come up with a roadmap of recommendations and actions to help break down the barriers worldwide.
My job will be to continue to transmit those discussions to the outside world. If you have any comments, suggestions, or questions for the authors of the study on barriers to access, please leave them below or use the contact form and I will make sure they are heard.